TY - JOUR
T1 - Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis
AU - Shaw, Karen
AU - Southwood, Taunton
AU - McDonagh, Janet
PY - 2006/4/15
Y1 - 2006/4/15
N2 - OBJECTIVE: To examine agreement about physical health, functional ability, and health-related quality of life (HRQOL) between adolescents with juvenile idiopathic arthritis (JIA) and their parents. METHODS: The study group comprised 303 adolescent-parent dyads who completed individual questionnaires, including the Childhood Health Assessment Questionnaire with visual analog scales for pain and general well-being, and the Juvenile Arthritis Quality of Life Questionnaire. Agreement was determined using the Bland and Altman method. RESULTS: Approximately half of the adolescent-parent dyads showed clinically acceptable agreement for pain, general well-being, functional disability, and HRQOL. Where discrepancies occurred, there were similar numbers of parental overestimation and underestimation, with the exception that parents rated functional ability worse than did adolescents. Parents were also consistent with respect to overestimation or underestimation, irrespective of the health domain in question. Agreement was associated with better disease-related outcome variables, but was not significantly influenced by demographic factors. Agreement between adolescents and parents was dependent on the level of disease outcome and the health domain under scrutiny, and was less for moderate disease outcomes (as compared with mild or severe) and less visible phenomena (e.g., pain, global well-being). CONCLUSION: There is a wide variation in agreement between adolescents with JIA and their parents that is dependent on which health-related variable is under scrutiny. Proxy report is likely to be valid for adolescents with JIA at either the mild or severe end of the spectrum and/or for the visible manifestations of the disease. Consideration of both adolescent and parent-proxy reports is therefore important in future research.
AB - OBJECTIVE: To examine agreement about physical health, functional ability, and health-related quality of life (HRQOL) between adolescents with juvenile idiopathic arthritis (JIA) and their parents. METHODS: The study group comprised 303 adolescent-parent dyads who completed individual questionnaires, including the Childhood Health Assessment Questionnaire with visual analog scales for pain and general well-being, and the Juvenile Arthritis Quality of Life Questionnaire. Agreement was determined using the Bland and Altman method. RESULTS: Approximately half of the adolescent-parent dyads showed clinically acceptable agreement for pain, general well-being, functional disability, and HRQOL. Where discrepancies occurred, there were similar numbers of parental overestimation and underestimation, with the exception that parents rated functional ability worse than did adolescents. Parents were also consistent with respect to overestimation or underestimation, irrespective of the health domain in question. Agreement was associated with better disease-related outcome variables, but was not significantly influenced by demographic factors. Agreement between adolescents and parents was dependent on the level of disease outcome and the health domain under scrutiny, and was less for moderate disease outcomes (as compared with mild or severe) and less visible phenomena (e.g., pain, global well-being). CONCLUSION: There is a wide variation in agreement between adolescents with JIA and their parents that is dependent on which health-related variable is under scrutiny. Proxy report is likely to be valid for adolescents with JIA at either the mild or severe end of the spectrum and/or for the visible manifestations of the disease. Consideration of both adolescent and parent-proxy reports is therefore important in future research.
KW - health-related quality of life
KW - parent-child agreement
KW - juvenile idiopathic arthritis
KW - adolescent
UR - http://www.scopus.com/inward/record.url?scp=33645919003&partnerID=8YFLogxK
U2 - 10.1002/art.21834
DO - 10.1002/art.21834
M3 - Article
C2 - 16583398
SN - 1529-0131
VL - 55
SP - 189
EP - 198
JO - Arthritis & Rheumatism
JF - Arthritis & Rheumatism
IS - 2
ER -